I’m new here!
hi my name is aly. I'm here because i’m dealing w lupus/sjögrens. it feels as though my whole support system doesn’t understand this. i feel alone.
#MightyTogether #Anxiety #Depression #Lupus #ADHD #Fibromyalgia
I didn’t know if I was going to post here, I read lot’s of different stories posted and they’ve helped tremendously. I could use some advice or thoughts. I’m 26 with fibromyalgia, Sjögren's syndrome, raynards syndrome, rheumatoid arthritis, and hyperglycemia. I also deal with ptsd, anxiety and panic attacks, acrophobia, and bpd. I’m also very alone and going through some serious emotional pain as well. My supposed to be partner who blames me for everything! Literally he is in complete charge of everything but blames me for money issues. It makes absolutely no sense on his reality to me. I beg him for help and attention and I get more insults and anger. I’m really to the point of wanting to just die. And he doesn’t care about that at all. I feel absolutely alone and I’m overwhelmed with fear and sadness. He also attacks me from time to time. He says it’s my fault and I usually end up apologizing for the whole situation. I’m lost and idk what the hell to do! Please some advice 🥹❤️
My optometrist wants me to try Restasis for my dry eyes. Has anyone used this & had relied? I go through otc eye drops like crazy & they hardly work.
Pushing through
A few weeks ago I got my mid-year review at work. I knew it was going to be bad, but it was worse than I thought. I have been very fatigued, had lots of brain fog (difficulty with word finding, especially), and had some pretty severe increased pain. I have been missing a couple of days every couple weeks, which is exactly what my FMLA says is what I need to do. So basically, I am getting marked down for being sick and missing meetings.
Since the review, I have been pushing through and working when I should really be resting. Because of the extra stress and strain, I have developed a lovely stammer to go with everything else. But I have made it to work.
Today my supervisor asked how I have been doing, and I just let the truth out. I told her that I am exhausted all the time, that my evenings consist of going home, sometimes eating something and most times eating something processed or take-out, and then going to bed around 5pm so I can get up the next day at 5 am and still be exhausted. I told her about my weekends - sleeping and resting as much as possible (sometimes as much as 22 hours at a stretch if my muscle relaxers work). That most weekends I can barely do the laundry to have clothes for the next week’s work. I pointed out that my doctors have all said that my symptoms might improve if I could lower my stress and be able to do more to take care of myself.
After a long, uncomfortable pause, I got back, “It must be really hard dealing with that.” Then she started in on how I need to start a new cross training program in my department. The cross training program I have been trying to get going and have been waiting for her to pick the staff I am to train.
Am I being overly sensitive thinking that this is a pretty bad response?
Anyway, needed to vent a little tonight. Now I’m off to as much of a marathon sleep session as I can get.
Sad but gonna be ok....#MightyPoets #ArtTherapy #Fibromyalgia #Osteoarthritis #sjogrens #Anxiety #PTSD #heartbreak
Hey there, it's been quite some time since I've posted. I got swept up in a lovely, sweet love affair that I thought was true forever love, and now it's over... Life moves on, lessons are learned, but I wrote a poem about it for old time's sake.
To the Guy who Broke Down My Walls and Then Broke My Heart--
Thank you for being there when I needed someone to guide me out of a very dark place
Thank you for showing me my heart wasn't made of stone, that I could still love and trust and feel connection to someone
Thank you for reminding me that I am strong and beautiful and capable of anything
Thank you for all the laughter
Thank you for a fall and winter full of feeling sexy and adored and safe and happy....
....
....
Thanks for dumping me... It's an experience I've never had before and even though it SUCKS, on some level I understand why it had to happen...
....
Oh, and just one more thing--
F**K YOU for breaking my heart and being the reason I have to put my walls back up!
Asking for help
Hi all! I had a bad flare & the inside of my nose is completely dry. It's red & sometimes painful. Anyone experienced this? What did you do to fix it?
In Bed. Doing a lot of thinking today.
Stress and autoimmune disease have strong links, but people often overlook them. We find that connection in three different ways. If you give me a minute of your time, I’ll tell you what they are and where you can go from here. I’m willing to bet that if you have an autoimmune disorder, this won’t come as a surprise to you. People with chronic severe stress have an increased risk of developing an autoimmune disease. People exposed to long or short-term extreme stress can develop things like PTSD (post-traumatic stress disorder), adjustment disorders, and acute stress disorder. Researchers found that in the long run, people with these diagnoses were more likely to develop an autoimmune disorder. In particular, people with PTSD were at risk for developing multiple autoimmune disorders. Sjogren’s patients are more likely to experience significant life stress in the year right before diagnosis. When comparing people who were just diagnosed with Sjogren’s and no other autoimmune disease (formerly called “primary Sjogren’s syndrome”), researchers discovered that those with the disease had higher stress than a comparison group in the year leading up to diagnosis. People with a variety of autoimmune diseases often report that stress is a trigger for symptom flares. Even though there are no large-scale studies confirming this, pay attention in any support group and you will see that many people find stress can bring on a flare. And then that flare causes more stress. The cycle can go on and on and on. It’s hard to deny that stress is related to autoimmune diseases. Life is stressful, you can’t avoid that. So what can you do, then? If you can tame the stress in your body, you can help cut down on those symptom flares. Strategies that help you prevent that buildup of tension, and even reduce it on demand can help bring your baseline tension down and interrupt that vicious cycle of stress-symptoms-stress.
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